Perceptions of Alzheimer's Disease and Related Dementia among Indigenous Peoples in Ontario, Canada (2009 - 2014)

Led by Drs. Kristen Jacklin and Wayne Warry, the purpose of this research was to speak with Indigenous people with dementia, their caregivers, healthcare practitioners and other key informants in order to gain knowledge about the attitudes, beliefs and behaviours related to Alzheimer’s disease and other dementias in diverse Indigenous communities in Ontario. A qualitative research approach was used that was mindful and respectful of Indigenous methods of gathering information. A community-based research design was employed that involved partnerships with Indigenous communities on the design, development and implementation of the research protocol. Community members guided the development of funding proposals, key questions, methodologies and data analysis. Ultimately, several methods were used to develop this knowledge, including interviews, focus groups, and participant observation.



 

 

 

 

 

 

 

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Western understandings of dementia are presented as a backdrop to local perceptions concerning the symptoms and meaning of dementia, practices relating to detection, treatment and care, and healthy aging. We examined our participants’ understandings of the causes of dementia and what dementia means in their communities. We also presented our findings related to local strengths in coping with dementia, as well as indicating barriers to dementia detection, and care and service needs within the community.

 

Funding:

This research was generously supported by the Ontario Mental Health Foundation, the Alzheimer’s Society of Canada, the Canadian Institutes for Health Research, and the Indigenous Health Research Development Program.

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Acknowledgements:

We would like to thank the many community partners, community-based researchers, community advisory members, key informants, and participants, as well as the research associates that contributed to this work.
 

Reports:
Jacklin, K., Warry, W. and Blind, M. Perceptions of Alzheimer’s Disease and Related Dementias in Aboriginal Peoples in Ontario: Sudbury Community Report (64 pages). Submitted  to: Sudbury-Manitoulin Alzheimer’s Society; N’Swakamok Indian Friendship Centre.
 

Jacklin, K., Warry, W. and Blind, M. Perceptions of Alzheimer’s Disease and Related Dementias in Aboriginal Peoples in Ontario: Six Nations Community Report (57 pages). Submitted to: Six Nations Health Services.
 
Jacklin, K., Warry, W. and Blind, M. Perceptions of Alzheimer’s Disease and Related Dementias in Aboriginal Peoples in Ontario: Ottawa Community Report (54 pages). Submitted to: Odawa Friendship Centre, Ottawa.
 
Jacklin, K., Warry, W. and Blind, M. Perceptions of Alzheimer’s Disease and Related Dementias in Aboriginal Peoples in Ontario: Moose Cree First Nation Community Report (58 pages). Submitted to: Moose Cree First Nations Health Services.
 
Pace, J., Jacklin, K. and Warry, W. Perceptions of Alzheimer’s Disease and Related Dementias in Aboriginal Peoples in Ontario: Manitoulin Island Report, (53 pages). Submitted to: Wikwemikong Health Services Committee, Wikwemikong Health Centre; Noojmowin Teg Health Centre; Mnaamodzawin Health Board, Mnaamodzawin Health
Services; M’Chigeeng Health Centre.
 
Jacklin, K., Warry, W. and Dietrich, D. Perceptions of Alzheimer’s Disease and Related Dementias in Aboriginal Peoples in Ontario: Thunder Bay Community Report (51 pages). Submitted to: Thunder Bay Indian Friendship Centre and Anishinaabe Mushkiki Health Centre.

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